Genomic databases access agreements: legal validity and possible sanctions |
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Authors: | Yann Joly Nik Zeps Bartha M Knoppers |
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Institution: | (1) Deptartment of Human Genetics, Faculty of Medicine, Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, Suite 5101, Montreal, QC, H3A 1A4, Canada;(2) Deptartment of Human Genetics, Faculty of Medicine, Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, Suite 5214, Montreal, QC, H3A 1A4, Canada;(3) St John of God Pathology, Subiaco, Western Australia;(4) School of Surgery, The University of Western Australia, 35 Stirling Highway, CRAWLEY, WA, 6009, Australia |
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Abstract: | Large-scale, public genomic databases have greatly improved the capacity of researchers to do genomic research. In order to
ensure that the scientific community uses data from these public resources properly, data access agreements have been developed
to complement already existing legal and ethical norms. Sanctions to address cases of data misuse constitute an essential
part of this compliance framework meant to protect stakeholders in genomic research. Yet very little research and community
debate has been done on this most important topic. This paper presents a review of different sanctions that could be invoked
in cases of non-compliance from data users. They have been identified through comprehensive research and analysis of over
450 documents (journal articles, policy, guidelines, access policies, etc.) related to this topic. Given the considerable
impact on users of even the milder sanctions considered in our paper, it is essential that stakeholders strive to achieve
the highest degree of standardization and transparency when designing controlled-access agreements. It is only fair, after
all, that users be able to expect that the border between acceptable and unacceptable conduct is clearly delineated and predictable
in controlled-access policies. This suggests the importance for researchers to undertake additional empirical studies on the
clarity and accessibility of existing database access agreements and related policies in the near future. |
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